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  • AADD Moderators: swilow | Vagabond696

my RLS story...

cheers dude.
it sounds promising.
from the reading i've done its twice the strength and slightly different mechanism of action.
i wonder if they will be doing something similar with pregabalin, that would be worth them looking into surely.

its not for sale in the US from all the searching i did, so it will be interesting to see how long it takes for it to be on sale on here.
 
^ It's only just recently been approved by the FDA; I received an email notification of the approval earlier this month but am not sure when it was actually officially approved.

Keep in mind that once it is approved by the TGA, it still has to be approved for a Government subsidy and for that to happen it has to be proven cost-effective, etc..

My lead today dried up, so no new information but am contacting the TGA and hopefully will have something soon.
 
yeah i realise its a lengthy process, but still sounds promising and at least it means movement in terms of it being sold here eventually.
i've paid $50-$70 for prescriptions of random shit that hasn't worked on many cases, i'd be happy to pay double for something that works.

today i get to try imipramine...yay

edit - after doing some reading no chance i'm going to try imipramine when 2 other TCAs haven't worked and can increase or cause symptoms both during use and when in withdrawals.
fkn so over random medications
 
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^ Imipramine does have extrapyramidal side-effects; it's weird that they are trying that for your RLS, do you know what the reasoning is? I'm guessing it's the effects it has on dopamine...
 
they are trying random medications that are listed for neuropathic pain and are trying to treat my depression/anxiety in one hit, hence the amitriptyline.
they are also playing the histamine anti-depressant cards pretty heavily in an attempt to help me sleep (hence trying Dosulepin also)
i'm finding the amitrityline withdrawals quite bad alone, not going to chance any more.

i have no idea what is going through the Drs head when they know i am on the pain clinic waiting list under urgent as directed by my GP himself and he knows the wait is at least 2 months.
he keeps saying a stronger analgesic may not be the answer and has written on a few reports that my condition isn't responding to 'standard analgesics', but he hasn't even tried them.

i would love to try pregabalin before any more random shit or even opiates, but at the moment i'm going through bankruptcy and still can't get it on the PBS.
i keep thinking that things will get better, seems quite the opposite.
bah! i hate shit being so negative, i'm sick of sounding like a whinging cunt lol.
 
went to see the pain specialist today, cymbalta is the random anti depressant of the week lol.
at least he explained why he was prescribing it and after some reading it could be worth a shot.
just hoping i don't get any other shitty side effects.

i brought up pain relief specifically and he danced around the subject just like my GP.
guess we'll see what happens after a month of these...
 
Mr Blonde said:
^ I was on risperidone, which at the max is at the low end of the half-life of olanzapine and I was always wanting to just sleep and do nothing each day.

I don't like antipsychotics at all, I don't feel as if they even really helped me at all. They reduced psychotic symptoms for me obviously, but that benefit was basically cancelled out by the depression it caused. :\
Click to expand...

I found that antipsychotic worsen my RLS due to there dopamine lowering.
 
i'm currently taking cymbalta and it seems to be doing ok so far.
i dont have the money to buy repreve on the chance that it will work :(
 
have tried baclofen and it didn't help.
i've tried sinemet and sifrol as well, sinemet increased symptoms and pain during the day time.
i'd like to try repreve, but i don't have $50 to spend on a chance at the moment.
cymbalta seems to be working, so who am i to argue lol
 
$50 thats the weak one get the 2mg box its $120 but you get heaps better value for money.
i take 1mg every night.
duloxetine has some serious side effects i wonder if it works similar to cyclobenzaprine (mellow yellows) cause i loved them.
 
duloxetine is working.
i have no pain and the restless feeling at night is lessened.
i haven't noticed any side effects other than some kidney pain, some random nausea and a few headaches. nothing extreme and certainly better than any other random anti depressants on all aspects.
 
Taking an SNRI for restless leg syndrome is a big commitment. Exercise helps and weed helps some people.
Why did your doctor script dulox? What do you think caused your RLS?
 
why is it a big commitment?
most other drugs i've taken have had a similar time for the drug to be effective (4-6 weeks) and have had similar/worse side effects with little positive outcome.

there is two issues here, RLS and nerve pain.
regardless of the RLS, the nerve pain had become such an issue that i needed to find something that would make me feel comfortable - the anti depressant/anti anxiety properties of dulox was also considered as a positive in my current situation.

RLS runs in my family, i possibly made it worse through drug abuse, but we'll never know that.

the MRI on my spine showed that i had 3 partially herniated discs in my upper lower back.
he said it may have been from heavy lifting but no one will look at addressing the issue until it gets worse. i don't really understand that.
i think i had been mistaking the kidney pain for back pain, and i'm unsure if the disc issue is related to my nerve pain.

so its all just more confusing information.
 
Must be like mellow yellows. I recon lyrica would be your best bet but that again has withdrawals. How long do you think your nerve pain will last? like is it an ongoing issue?
I mean because i would think it would have similar addiction/withdrawal as SSRIs do.
 
i tried some lyrica whilst taking the dulox and i didn't notice anything different.
no idea how long i'll have the nerve pain.
no one can tell me how i managed to get herniated disks - herniated disks should heal on their own in 1-6 months, i've had the nerve pain for 2.5 years.
and no one is willing to say that my nerve and muscle pain could be caused by the back injury and that i shouldn't worry about it lol.

i've read that herniated disks can be caused by sitting with repetitive movements in a high stress environment, which lines up perfectly with my job as a desktop support technician, but i've had ample time at rest for a normal herniated disk to heal.

so i've got no fucking idea whats going on really. i was happy that i finally found some relief from the pain, but without knowing the cause of the pain or the back injury, i still can't go back to work in case it aggravates things.

i have all symptoms from this site except my nerve pain is from the knee down only and i dont have any muscle weakness
http://www.cedars-sinai.edu/Patients/Health-Conditions/Herniated-or-Ruptured-Disc.aspx

random shit bout how sitting can cause herniated disks (not sure how much of this i believe lol)
http://www.sfbackpaindoctor.com/2009/02/can-sitting-long-periods-cause-a-disc-herniation.html

edit - i understand the dulox has withdrawal properties when stopping them, but at the moment it's the only thing that has helped me after trying so many random meds.
 
What dose were you taking the lyrica at? Have you tried gabapentin?
There has been some good medications coming out in the treatment for nerve pain in recent years.
If it was me i would be trying drugs & doctors one by one to find out what works. Start the doses of low and titrate up to see if it works.
I would think adding some gabapentin or lyrica to what your already taking would work wonders. Maybe you just need to be put on an opiate for pain management. Bupe patches might work wonders for you.
 
i started doing that initially to try and find a doctor that would actually take a second to look into things a bit more than thinking it was all in my head, and i'm still looking lol.

i only had a small amount of lyrica so tried 150mg twice a day, i probably should have gone more, but i honestly don't feel the need to. i'm very comfortable.
i tried gabapentin on its own a while ago and i was having 600-800mg three times a day with little relief. the cost and side effects outweighed the very minimal benefits.

i'm honestly wrapped to not feel shooting pains running up my nerves and no deep muscle ache. that all i've wanted for so long, so i'm going to try and make the achievement last as long as i can in terms of giving me a moral boost.

i tried extremely hard to go on some form of opiate treatment after trying so many meds with no luck and only wanted some comfort, but i was always refused. i eventually got to see a pain specialist (not pain clinic) and the first thing he tried me on worked. so i'd rather not use up my opiate card now in case i need it in the future.

you know that old saying, if it aint broke, don't fix it? :) i'm pretty happy not to fuck with anymore meds for the moment.

once i have some more solid info in terms of a diagnosis a proper treatment, i'll attend the pain clinic and see if there are any other meds that are more suitable.
god knows when a proper diagnosis will come about though, just gotta hold on tight to the positives when they come.
 
Fuck this is a bit of a blast from the past...
I was doing some reading and came accross an ausdd thread and reminded me bout this thread.

Not long after that last post I ended up going to see a methadone prescribing clinic as a last resort as all the other meds I was taking were only effective for around a month in each instance.

I tried so hard to find a doctor that would help me before going on methadone but it was a no go so it was really a last resort. I wasn't sleeping or functioning in any way due to the pain and thankfully methadone helped with that. I had to increase my dose steadily over the 3 year period to the point that I was on 85mg and only getting mild relief while being treated like scum because I was part of a program designed for addicts not pain management.

Long story short I broke my ankle recently and when it came time for surgery I told every fucking doctor and nurse I saw that I was on methadone so I needed a specialised plan for pain relief. Before surgery it was decided I would get fentanyl and a ketamine drip for after surgery even after I triple checked the fentanyl would work! They decided against a sciatic nerve block due to my nerve pain and some numbness that I have in my feet/toes.

I woke up in the worst k hole. I couldn't feel or move my body but I could feel the pain from drilling and screwing plates into my bones. I felt every mm of the screws and was trying toscream I pain but I couldnt. I eventually came to and told the nurses to which they replied 'why don't you take your methadone'. They gave me 1mg morphine on the machine which I hammered and it did nothing obviously and I didn't know it was byo pain relief so didn't have my methadone with me. They finally upted the morphine to 2mg which still did nothing lol so I think they gave me some in my arm which they were worried would kill me so had my heart rate monitored and blood pressure check regularly. When I was able to talk I had to ask my mother to go home and get my methadone which I luckily had in the form of takr aways...

Anyway it was a fuckin horrible experience so I swore I'd get off the methadone so the piss weak 10mg oxys and 5mg endone they gave me would work if I took 80mg worth. So I went through 2 days of mild withdrawals and 1 day of hell. After that I started taking the oxys every 12 hours as prescribed and they helped with my nerve pain. As per a conversion online my 85mg of methadone was equal to 242mg of oxycodone so it obviously works a lot better for my pain seeing as I take 60-80mg every 12 hours or so.

I told this to my gp who has been very helpful compared to the specialists I've been seeing and he finally agreed to be my prescribing doctor and is happy for me to be on 80mg targin twice daily (40mg oxycodone/20mg naloxone tablets) which I assume is only because its not abuse friendly. Which at the moment I couldn't give a fuck about I just want pain relief. So today I'm seeing ernie my methadone doctor to release the s8 permit so my gp can obtain one.

For me this is massive as I'm on a disability pension and can't afford $140 a month for methadone which for me has so many drawbacks for my situation.

I am still going through some withdrawal symptoms due to the difference in doses but I'm happy to be on a normal prescription and no longer being tied to a chemist is amazing for me!

Sadly it seems we will never find a reason for my nerve pain, and I've tried things like physio and epidurals amongst so many different meds. So I will be juggling different methods of pain relief for the rest of my life.

I'm currently taking the 40/20mg targin twice daily and 300mg lyrica twice daily as well as a heap of different vitamins etc. I'm hoping to get back into exercising when my ankle is better as I found it is a massive benefit.

Sorry for the rant, hopefully some of the info and bushit in this thread will help someone. Its been a massive mission and I know its not gonna get much easier in the future but I've gone through enough shit in the 5 years I've been chasing drs...

Cheers
 
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